As I look back on the person I was years ago, I can see how some very important personal perceptions have changed forever and how they have changed who I am fundamentally and irretrievably.
1. Before getting sick I had the utmost belief in medicine and a naive admiration for ALL things medical.
I never questioned medical science or doctors, but rather saw them as all knowing and all seeing godlike beings; Infallible and with caring and devoted natures.
That’s gone forever.
Experience has taught me completely differently.
There have been some helpful and supportive medical professionals who still believe in care and kindness, but they are often the exception and extremely rare to those with chronic and progressive conditions.
Today I realize that there are some things that have certainly changed over 100 years of medicine, but there is still SO much more that remains a complete mystery.
People WANT to believe that medical science and doctors will make all your problems go away, and even wind back the biological clock and make you look and feel younger… But there are many diseases, illnesses and congenital challenges that are still untreatable and very poorly understood.
If you fall into the first group of people of medical needs then you may get all the support and answers you need but very little focus is out for those who are NOT in these categories.
We don’t fill the media or documentaries. We don’t appear in advertisements with smiles and hugging doctors.
When someone tells me that they are sick I look at this information in very different ways than I did years ago.
2. I have a better sense of who I am now.
For many years I was always in search of many unanswered questions about who I am and what I want for myself on a deeper level.
Many of those questions have been answered today by the difficulties and challenges I have faced, and I can now draw a clear line around what I accept and don’t accept from myself and others.
I like who I am at a deep level, despite my illnesses, and that no longer needs such validation by others.
3. Having a chronic illness has made me have very little in common with much of the rest of the world.
This can even include many fellow Autoimmune and chronic sufferers. We are all different after all.
I don’t always see things and respond to things in the same way as others with chronic conditions. I am ok with that now. We all have varying degrees of abilities that makes a HUGE difference in our perspectives and realities.
Nothing can seperate you more from the rest of the world than living with the very minimum of daily abilities. Therefore I find myself very different from a great many people and so I have grown used to my own company.
4. Goal setting is the hardest thing in my life and on par with the struggles with pain management. Maybe even worse.
There is so much I wish I could do and every day I still want to achieve something for my own self esteem.
Somedays I have to be happy with being able to shower myself. Some days it’s going to coffee. I feel better when this can include an outing, a visit with a friend, a movie or anything! … Some days I must be content with just managing to hold it together without drowning in pain and many other disabling symptoms.
Goal making and goal achievements have become my inner demons. They haunt my days and I am facing the very real possibility that they always will.
On the positive side it makes me keep trying. On the negative side, it is the means by which I torture myself when I can’t do what I dearly want to.
Some people may like to assume that as a chronically ill person that I enjoy sitting in bed and hiding out at home all day… But nothing could be further from my truth.
5. The future worries me for reasons that most may never understand.
The loss of independence brings with it a multitude of worries and concerns that most people can’t even begin to imagine.
For example, It is my deepest wish that I will die before my husband. But what if it doesnt happen that way? Of course we both want to ‘go together’ but…
A ‘friend’ if mine, in a very frank and confronting moment, reminded me that if something happens to my husband “… [you] will be f$&ked!…” I was speechless.
This is a thought, that despite how often I can successfully push it away, will always keep coming back. It is a very real issue that does need a great deal of thought but it is not an easy topic to think about.
Generally speaking, there have been very few easy topics or decisions since my health issues started so I relish the easier topics and the lighter moments like they were gold! Which is probably why I have so many pictures of my pets and my gardens clogging up my computer! 😃
Every chronically ill person worries about their future intensely, especially when we feel that the world sees us as burdens and undesirable.
Years ago I was on a date with a man who felt it necessary to list my desirable attributes. He said …” I was funny, intelligent, outgoing, attractive, had my own career, had my own money, confident, talented, successful and … a catch “.
If that is the formula for which I will be measured then it must mean that I am no longer a catch, and so I must factor that into any future plans.
Whilst I am not suggesting that this is why I am with my husband AT ALL, it is sad when I am confronted with how the world would view me if I had to face this world on my own and with these diseases.
6. I am always surprised by just how much we have had to fight for every little thing since my illnesses.
Either my husband or I have to fight for any and every little thing from a specialist appointment with rooms that are accessible. A hair dresser that may come to our home (in case I shake or throw up). A bathroom that allows me to move around comfortably and safely… And the list goes on.
There is not one day that hasn’t required us to try and solve or resolve a problem that never existed before I become sick and, sadly, even my husband has faced so many issues and problems as a carer that we could never have dreamed of. I feel especially sad for him as he is often left to tackle these issues when I can not physically do it.
If you think that the world makes allowances or exceptions for those with chronic challenges you are very wrong and this sort of thinking can be dangerously unnerving when you are faced with the realities. Truthfully the only people that may understand some of the day to day challenges are those who have faced them as well.
This is not a complete list of issues, nor is it written for sympathy or for compliments. Simply a small glimpse of some realities.
I am of course not speaking for anyone else or suggesting that I speak for the chronic community at large. These are my thoughts and realities but if you identify with any of them I send you my deepest respect and empathy. As always.